Tag: special needs

autism

Autism Parents: It’s Okay.

Lexi Magnusson7 Comments

I wanted to say publicly the things I’ve said to so many parents I’ve encountered along the way: It’s okay.

It’s okay to be upset when your child is diagnosed with autism. It’s okay for it to take a while for you to adjust your entire world to a new normal. It’s okay to be sad. To be frustrated. To scream into pillows and cry yourself to sleep at night. It’s okay. It doesn’t mean you love your child any less. It doesn’t mean you don’t want them if you don’t want their autism. What good parent wants their child to have a disability? What good parent doesn’t feel pain at the sight of their child struggling? Having a tough time with the diagnosis shows how much you love them. It’s not because you don’t accept them. Don’t ever, ever, let anyone tell you differently.

autism parents it's okay
Me holding Casey, both exhausted after a rage that lasted several hours.

You will go through the motions. You will seek desperately for a cure. You will despair when you realize that there is no cure. You will get through that. You will move on to a place of understanding. It’s okay to get your child carefully chosen therapy and programs that will benefit them. It doesn’t mean you are trying to change who they are or stamp out their autism. It means that you want to give your child every opportunity to manage their disability and to thrive in this world. What parent, of neuro-typical children or other, doesn’t want their child to be given every chance to succeed? Does my getting Abby, my daughter with Down syndrome, therapy and extra help at school mean that I don’t accept her Down syndrome? No, it just means that I want her to be the best Abby she can be. It’s the same for my two children without disabilities. I want them to grow and learn to the best they can. Doesn’t mean I don’t accept that their best might not be the same as others.

Acceptance doesn’t mean you don’t have the right to be tired. To be frustrated. To be sad. Acceptance doesn’t come all at once and you will find it’s more of a tight rope than a way of life. It’s been 8 years since Casey was diagnosed. It took me years to get to a place where I was okay with him having autism. I still hurt when he hurts, it still kills me when he’s sad that people don’t invite him to parties or exclude him from games because he doesn’t understand social norms, or because he freaks out when things get to be too much. It doesn’t mean that I don’t ache to take the pain away he feels when his world isn’t the way he wants it to be. I am his mom first. Having empathy for my pain is not the same as sorrow or not accepting him for who he is. It means I love my child fiercely and I hate when he suffers because of his autism.

Autism is a disability. It’s not wrong to say that. It’s not ableist to want your child to be the best that they can be. It’s parenting.

Stay away from people who tell you that it’s not okay to feel anything you are feeling as you work to get through the day. It’s okay to not be okay all of the time. Some pain demands to be felt in order to deal with it and move on. It’s not wrong to seek help when you find that you cannot manage the pain on your own. Find friends that understand. Go to parent meetings in the school district or seek them out through your Early Intervention program. They’re out there. Above all, be honest. With yourself and with others around you. Accept help when people offer. Take any break you can get.

You will find in quiet moments the good in autism. Even if they are fleeting. Even if it’s harder than you had ever thought it would be. You will one day stop seeing the autism as separate from your child but a piece of what makes them who they are. You won’t even realize that it’s been happening for a while. And you will see that you wouldn’t change who they are for anything. You will find joy in their joy, whatever looks like. It doesn’t mean it will be easy. It means it’s okay.

advocacy · autism · Down syndrome

Retarded.

Lexi Magnusson12 Comments

There’s a sting I feel when that word is said. A jump in the blood in my veins. Because, for me, that word carries a weight. It reminds me of my children. It shows that even still, this world is not considerate of them, and what’s more, can be downright cruel.

Retarded.

The word used as slang bothers me. What’s worse for me though, is that it seems to not bother the people who use it. They throw it out in every day language as if it carried the same meaning as words like “goofball” and “sillypants.”  It’s not the same.

Down syndrome and Autism, Spread the Word to End the word

This is why. These are my kids. The word ‘retard’ in all of it’s forms is built upon a framework of the ugliest parts of disability.  It shows how, again and again, the disabled are the last to be treated like equals. Other derogatory terms are publicly decried from within the community that the word is offensive to and from without. Words like “faggot” and “nigger” are bleeped out on TV, as is completely necessary, but you’ll still see your favorite TV host using “retard” or “****tard” or something of the like without batting an eye.  And sure, they’ll hear it from the disability community, maybe even issue a one line apology on twitter, but that’s all.

The word “retarded” needs to go away. But I’m not crazy enough to say that it will. Like any word, no matter how ugly, people are still going to use it. What I want, at least for now, is for people who use it to understand the weight that it carries.  If you’re going to throw out that word in casual conversation, I want you and everyone around you to know that using it makes you look ugly, small, and completely socially unaware. Just the way anyone would if someone threw out any of the recognized socially disgusting words, a few I’ve mentioned above.  I want gasps to echo the same way as if you had used the n-word or others of the like, in place of ‘retard.’ Because THAT is the same.

The word retard, as I’ve said a million times before, uses my children and all that they endure, as a vehicle for your petty insult.  Because when you say that you’re acting retarded, you’re comparing yourself to my child. You’re saying that you’re stooping down to their level.  You can say you never saw it that way, that it’s just a word, but if you’re reading this, now you can’t. You now know better, so you can do better. You can be better. And the next time someone around you says something of the same, you can stand and gape at them in shock that they’d stoop so low as to devalue the lives of people who a great deal of the time cannot defend themselves in order to get a laugh.  And it can spread this way. You can help me by just understanding that this word carries weight, born by the people with the disabilities themselves, and to let your friends know that it’s not okay to use around you.   It’s the simplest things that can create the biggest change.

autism · Down syndrome

10 things I wish I would have done as a special needs parent from the beginning.

Lexi Magnusson41 Comments

WheParenting children with special needsn Casey was first diagnosed with autism, I set out to be the perfect special needs mom. I worked really hard to know all of the information, read all of the books, all while trying to do the regular mom stuff- cleaning, laundry, meals, etc. I burnt out hard. I flung myself into a depression that wasn’t easy to dig out of. But when I finally got out of it what did I do? The same thing. This cycle repeated itself until I found myself in a therapist’s office dealing with chronic pain and debilitating anxiety and depression. I had to change.  Looking back, I see now what I was doing that wasn’t working, and found things that help.  I was fortunate to understand a lot of these things by the time Abby was born, but there’s still a million more things I could do to save my sanity. These are the first ten that came to me.

1.  Learn how to say ‘no’.

There are going to be people that suck the life out of you. You have enough on your plate, if these aren’t reciprocal friendships or endeavors, say ‘no’ whenever you genuinely don’t want to do something or simply can’t.

2.  Cut out all of the fluff.

Before Casey was diagnosed, I was seriously concerned about not having enough cute nicknacks in my house. It seems SO crazy to me now.  This has been a lesson to me on two fronts: 1. Cut out the literal fluff- anything ‘fluffy’ (nicknacks)  in your house that isn’t necessary. Or, at least, don’t buy any more. It’s one more thing to clean. It’s one more thing to get broken.  I have a veritable graveyard of Willowtree Angels that I HAD to have. Unless it’s something you do as a hobby, (see below) this sort of thing just clutters up your space and your brain. Which leads me to the second lesson: Cut out the figurative fluff. We live in a Pinterest world where there’s always some way to take an ordinary event and make it extra stressful. Children’s birthday parties are less party now and more extravagant events. Your kid isn’t going to remember the fluff, at least mine don’t. They will see pictures of them blowing out candles on ANY cake- store bought or one with baked in tears.

3. You’ll lose friends. Good riddance.

Someone actually did tell me that I’d lose friends after Casey was diagnosed. I didn’t believe her. I wish I had. And I wish I could have employed the second part of this point too. Disability is a fantastic friendship sifter. You’ll find out who your true friends are because they’ll stick around. They won’t expect you to be fun all of the time. They’ll listen. They’ll come over and sit with your kids so you can get a nap. Those who don’t stick around you are better off without. It sucks to learn that friendships aren’t what you thought they were; but it’s sure nice to know before you devote any of your precious time to someone who isn’t worth it.

4.  Don’t overload on disability-specific information.

We are are fortunate to live in a time where information is readily available at our fingertips. After each of my kids were diagnosed, I binged on autism and Down syndrome information. I only read books, blogs, websites and forums about the two. The problem with this is that a lot of the information out there tends to point out the negative aspects of disability. There are things you can’t learn from books- you have to live it.  I finally put down my Down syndrome books when Abby was a couple of months old and just enjoyed my baby.  I’m not saying to not do your homework, just make sure it’s not ALL your doing. Read funny stuff. Read stupid crap. Mix it up from time to time.

5. Listen to those who have gone before you.

Like I said, there is only so much you can learn from books. Life experience is the best teacher. Parents of older children or adults with disabilities know more than you do. They just do. Will they have done things or have the same perspective on your kids as you do? Maybe not. Listen regardless. I’ve learned more from my friends within the special needs community than I have from any book.

6. Don’t stop being yourself.

4bdf329af59c11e2be0322000a9f38f1_7This is a lesson for any parent, but especially for parents with children with special needs. Don’t try to fit yourself into the mold of what you think a special need parent should be. I used to think that I had to be brave and strong and happy all of the time. I had to convey to the world how supremely grateful I was for the challenges we had. Bullcrap. That is a mold I cannot and will not force myself into any longer.   I like my music loud, I swear, I complain and I make a thousand mistakes a day.  It’s not that I’ve stopped trying to be better, no, I just want to be a better version of ME.

7. Find a way to relieve stress.

I should say a “healthy” way to relieve stress. I’ve heard that heroin is a great stress reliever…but you know, it’s heroin.  My therapist back when I was having chronic pain forced me to find something that wasn’t autism, parenting, or housekeeping related to do that I enjoyed. He even went as far as forcing me to show him what I had learned to do. I craft. I make crappy jewelry and cards. I love it though. I have friends that exercise, some that knit and others that mercilessly mock me on Facebook. All of these things give their brains a break from the daily battles and give them something to do that is rewarding to them.

8. Take any break you can get.

I used to put my kids to bed and then think I had to get to work on my house, blog, reading, etc. I don’t do that anymore unless I want to. I use the time to relax, catch up with friends, or do something fun. If you find yourself child free, remind yourself to use that time to recharge. You might have to get a babysitter to have child free time. DO IT. I get how hard it is to find a good babysitter. I have an autistic son and a daughter who is medically complicated. It’s  necessary.  It’s expensive. It’s necessary. Find a way in your budget to have a night free at least every two weeks. If it means giving up eating out, data plans, etc, DO IT. It’s soooo important to be able to get a break. It’s vital to your relationship with your spouse or significant other, and it’s vital to your mental health. Even if you don’t go on a planned date, get a freaking babysitter so you can nap. I once paid a babysitter to watch my four kids so I could sleep in my car. I kid you not.

9. Medicate

You’re going to deal with more stress than the average person. If you’ve tried everything else and just can’t keep your head above water, get some help. You might just need someone to talk to. Do it. I’ve found that just talking to someone isn’t enough. I needed help to defray the daily emotional cost of having two kids with disabilities. On my best days, I still need help. Find a doctor that will work with you to find the best medication. I’ve just spent the last six months trying to find a good medicine to help with my new fun anxiety problems.  I’ve finally found one that gets me back to normal, and I use therapy to help me stay there. There is nothing wrong with needing medicine or therapy. Nothing.

10.  Enjoy it.

cd1e5beeed9811e2b65722000a9e00be_7You are your kids’ parent first. Advocate, teacher, and therapist are important roles, but they aren’t what you ARE. Enjoy it. As I’ve typed this out, Abby crawled on the edge of the couch by me and then dove head first into my lap. She giggled as she wriggled herself around so her feet were on my face. I ADORE her. I love my time with her when we’re not doing anything else but existing in our roles as mother and daughter. I love having Casey wake me up as he tries to stealthily crawl into my room to sneak into the spot between me and his dad. I love what all of my kids teach me, and though I complain a lot about the minutia of motherhood, I absolutely love being my kids’ mother.